Month: March 2016

Now that I finally understand that I am autistic, and can point to at least some of the ways in which that has affected my life, I am able to rethink many of my experiences in new ways. Like many other people whose autism went unrecognized until adulthood, I feel able to look back with new eyes, especially on those places where I struggled. Just as with words, meaning changes with context.

I am also starting to think about how I can bring that understanding into my present work and home life. Now that I know (at least a little better) what kinds of support and/or accommodations I might need, how can I go about creating or asking for them?

Up until this point, I have gone through life without accommodations — or rather, it would be more accurate to say that I have made self-accommodations. My relationships, my living arrangements, and my employment choices have all been influenced by my own sense of what worked for me and what did not. In most situations I have made changes when I felt things reach a breaking point, rather than continuing on and getting, well, broken.

But the trouble is, outside the context of disability, self-accommodation can easily look like failure; you just can’t handle the things other people seem to be able to. Even asking for accommodation (again, without that context) will often be seen as complaining. And gaining this context for myself doesn’t always help when it comes to support I need from other people, especially in situations where I am not sure how much to disclose.

And now… I’m not sure what else I want to say at this point; I only got this far by sort of thinking out loud. The main thing is that I don’t really know how to do this — after all, I grew up not knowing I even had a disability. And I’m sure that as I start to ask for the things I need, some people will interpret that as meaning that I’m not disabled enough to need supports. It’s a vicious circle.

Of course, the ideal situation would be if everyone, disabled or not, could ask for what they need without being seen as a whiner, a troublemaker, or a burden. We all have our strengths and weaknesses, as well as preferences for how we can do our best work. So let’s just build that world, and this whole question will be moot. Easy peasy. 😉

Thank you for inviting me to a potluck at your house! I haven’t seen you in a while, and I’m looking forward to catching up. It’s nice to know that I am welcome in this group of friends, and I’d like to feel that I belong.

But I am autistic, and this is hard.

First, I have to keep track of these plans, and be ready when the date of our gathering arrives.

I have to look up directions to your house, even though I’ve been there before; it’s been a while, and your town is unfamiliar.

I have to pick something to bring for the potluck, without knowing how many people will be there, what they like to eat, or what they are bringing.

I then have to buy or make it, and remember to bring it.

On the morning of our gathering, I have to decide what to wear, which makes me wonder how warm or cool your home will be, and how the weather will change.

I have to watch the clock and estimate how long the drive will be, to make sure I leave on time.

I have to drive to a quasi-unfamiliar place, glancing at my printed directions every time I stop at a light so I don’t forget where I’m supposed to turn.

When I get there, I have to figure out where to park.

Then I have to go inside, greet everyone, and answer how I’ve been.

I have to take time to look around and remind myself where I can sit and put my things.

I have to present the food I’ve brought, and monitor reactions to see if it’s ok.

I look to see what others have brought, and gauge whether I’ll eat enough and whether it will be messy.

Then we can start the gathering. 🙂

If I go through all this to attend an event, it means I value your friendship greatly. But if I don’t attend — especially if I cancel at the last minute — it is not a reflection on you. It may be that I just didn’t have the energy to face all of the above when the day arrived.

This time, I attended your potluck and had a great time, so although I am tired now I really appreciate the invitation. It will be a while before I can be social again, but I look forward to the next time I see you.

There’s a bit of tightness in my chest, a slight constriction in my throat, and an odd sense that some portion of my mind has gotten “hooked,” like a sleeve snagged on a thorn. All of these sensations are subtle, and sometimes it takes me a little while to notice that I’m feeling them. Sometimes I can at least track down the snagged thought and figure out what instigated the rise of this feeling, but any attempt to put a name to the feeling itself causes my thoughts to go fuzzy and vague.

If you asked me right now what I’m feeling, I would answer, “I don’t know.” I answer that way often, and I remember getting incredulous responses when I did so as a child. I think my parents and teachers must have thought I was being evasive, but I honestly just didn’t know. Sometimes I can take some time and figure it out, but not always — and for a long time it just didn’t occur to me that there was something unusual about needing to “figure out” what I was feeling.

There’s a (very cool-sounding) word for all this: alexithymia. This (in part) refers to a difficulty describing or naming one’s own emotions, as well as difficulty identifying the emotions of others. It can include a high sensitivity to physical sensations, and an inability to distinguish between those sensations and an emotional reaction. It is also very commonly found in people on the autism spectrum.

I get the big emotions most of the time — I know when I am angry, and I know that I love my husband. I know when I am happy, and I know when I am sad or grieving. But many other emotions are confusing, or just fly under the radar as some vague, unsettled feeling for a while until enough of it builds up that I take notice. More often than not, though, that build-up will quickly flash over into anger or tears, and I’ll still have missed the original source. And those strong emotions often come on too strong, enough so that I still struggle to convey the cause of my feelings to others in the midst of a tearful meltdown.

Alexithymia also makes it hard for me to know what I want. You ask me what I want for dinner? Open-ended possibilities are particularly daunting, but even when presented with options I can dither for a long time. And if I’m trying to figure out larger life goals, such as what kind of work I want to do? So hard to know.

Not all autistic people have alexithymia in the mix, but it is more common among autistics than it is in the population as a whole. Unfortunately, this may have contributed to the misconception of autistic people as not having feelings, but not having words for emotions does not mean that they aren’t there.

I am still learning more every day about all of these things, but I wonder if alexithymia is related to the autistic tendency to take every situation in as something new, instead of generalizing. We feel an emotion, but don’t automatically connect it with those that we’ve previously felt. This makes it difficult to build up a body of knowledge about what each emotion is and what it is called. And that, in turn, makes it hard to relate to what other people might be feeling; we basically lack a common language in which to share our inner experiences.

Some of that language can be learned, whether through books about psychology or by reading well-written fiction. But while learning more about emotions can be helpful, it is also helpful to realize that it isn’t always necessary to name what we are feeling. In fact, it is possible to acknowledge and process our feelings without naming them at all. And if we can help the people around us to accept our inability to explain what we are feeling — especially in the moment — we can give ourselves time to explore our inner lives on our own terms, without feeling the need to label anything.

And who knows? Maybe that approach can lead us to new insights that we might have missed if we had quickly named our emotions and moved on. 🙂

Yes, really — what a relief it has been to find out I am autistic! To ​learn that all my life there has been a reason for the feelings of confusion and “otherness” that have followed me. To finally find out that I am not alone in these feelings, to discover I have a community, and to learn some of the names for that community: Autistic. Aspie. On the spectrum.

Sure, there are other emotional reactions that often follow, and different people will react differently. But a very common reaction among adults who discover that they are on the autism spectrum is a deep sense of relief. This relief can be confusing to others, however, because they only see the difficulties inherent to autism, the ways in which it is a disability in our society. They have learned that autism is a tragedy that causes nothing but problems in the lives of autistic people and the lives of those around them.

And of course, there are problems — but one reason for the relief is that we’ve known those problems all along. We’ve been outsiders, alienated from our peers by communication difficulties. We’ve gotten overwhelmed in loud, bright public spaces to the point of shutting down. We’ve been told, over and over, that we’re just not trying hard enough. We’ve lived with these issues, struggled with them, and blamed ourselves for them all our lives. The fact that we have problems is not new information. What is new is the context.

Finding a reason for all those struggles helps pull us out of self-blame. Suddenly all the things we (and likely those around us) interpreted as personal failings are…not. We suddenly have an explanation for all the things that seemed so easy to other people but overwhelming to us. And we can finally acknowledge that those struggles have been real.

I didn’t want to start out this way. I didn’t want my first post on this blog to be about pain and tragedy. But today is the Disability Community Day of Mourning, and I did not want to let that pass without a few words.

Last year, at age 43, I discovered that I am autistic. I see this new knowledge as a blessing, a gift of self-understanding and self-acceptance that puts so many struggles and triumphs in my life into better perspective. It helps me to honor myself as I really am, to appreciate my strengths and my neurodiverse perspective while also connecting with others who share similar “wiring.” Yes, there are difficulties associated with autism, but finally knowing that I am autistic helps me manage them and allows me to take care of myself better.

But there’s also no escaping that much of the world does not see things the way I do. They do not see autism as a benefit to society, or even as a neutral difference among human beings. Instead, they see it as a tragedy, as something to be eradicated. They see it as something harmful, as a burden to those who love us — a burden so great that they will even excuse violence done to us by those who claim to love us.

This day of mourning exists because, with frightening frequency, disabled people are killed by their families and caregivers, and society sympathizes with their killers. Zoe Gross explains it better than I could, in her essay, “Killing Words.” (That link opens a pdf document.) All I want to add is that today my heart aches for this new community I have just found, a community that has already helped me so much as I learn more about my place within it.

So for all those in mourning, I stand with you. And for those who would like more information, ASAN’s Anti-Filicide Toolkit is a solid place to start.

(Image of a yellow candle on a black background, with the words “Disability Community Day of Mourning” in white.)